Day #134 “Is My Condition Part Of What Makes Me… Me ?” – Part #4

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com &
https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf


img_3811-1When I write about my story of Primary Progressive Multiple Sclerosis I write in a personal way… I write about PPMS as if he was a real person , with a real identity…(I have humanised him and even given him a name and a gender, his name is “My Story – and his gender is Male”

There are times throughout my writings where “My Story” himself makes an appearance & he is allowed to have a voice and even writes in the first person, I choose not to write for him (as a person telling another person’s story – in a disconnected third person kind of way)… “My Story” does have his own identity and he in fact as of late has started to identify himself as a comedian… (a self amused writer… as I personally see him).

I do think that in giving a human form to the identity of my PPMS, by giving him a name & a gender, by allowing him to speak in his own voice, in allowing him to identify himself as a comedian I think that I am just putting a lighter side to a diagnosis that exists in my body… that works against me in my everyday life… pushing its boundaries and “kick ass attitude” into my even white knuckled painful daily journey.

I have written before in and throughout my writings about my PPMS about how I feel that I am in my day to day life of having Ms test I know that I am in a fight with myself and my diagnosis to maintain who it is that I am…. and who it was that I was before my diagnosis of PPMS came to be a small part of who it is that I am now. I have written about how it is important for me to maintain my mind, my thoughts and my ability to learn new things.

And I have written on numerous occasions of my fears of how I would struggle to lose the who and the what parts of the very person that I am… what would I do without my thoughts and my mind processing and working abilities?? I would hate to think… my god I think that I would be better off being lost to this world than I would be if I had to live in this world with a diminished reality of whom it is that I am.

And there are times when I share a personal side of my PPMS story and how it affects me … just recently in a post I wrote the following:- “My Story”… I even thank him kindly when he makes me crash head first into the walls of my hallway… I don’t particularly find it funny when he trips me up on my many times folded socks (I have small feet and my socks have a mind of their own, together “My Story” and my socks work hard at pissing me off), but I give them a mouthful.. throwing my sox into the washing basket screaming “you deserve far worse treatment but maybe a spin in the washing machine will teach you who is boss..”

It sounds ridiculous… but getting mad only feeds the pain and symptoms… of “My Story” and my PPMS… I have found that humour humiliates both my symptoms and my ass-kicking socks and momentarily I feel a release of it’s at times overwhelming pain threshold that it can at times have over me.

I do tell people who ask about my Ms… that I Have Primary Progressive Multiple Sclerosis, It Can & Will Kick Me In The Ass When It So Has The Need & Or Want To… But Humour Keeps It’s Hold On Me From Knocking Me To The Floor.

I do choose to get up everyday knowing that at this moment in time that there is no cure for Ms, that there is only trials, treatments and day to day struggles…I have on many occasions been told that I am way to positive about my PPMS diagnosis “Like Really – Was That A Sentence, A Statement Or A Judgement ?”

I have told many people over the years since my diagnosis that there is truly no point in seeing the bad side of my Ms diagnosis, that crying & screaming “why me ?” isn’t for me… I tell people that at times Ms may have a tight grip on my pain threshold, but I believe that humour and giving it an identity like I have keeps the strong hold and the amount of medications that I have to take down to the minimum.

So I say to you my readers …. that maybe I am way to positive or even casual about my PPMS and its diagnosis/symptoms and maybe that positive attitude is too positive of an attitude for some people to handle… but for me, having a positive, humanising, humorous attitude about my PPMS is how i cope and get by from day to day – being positive works for me and whilst my positive attitude may not dwell well with others… I say to that…. What others think and how they feel about my positive attitude is just that “their thoughts” I choose not to weigh into the thinking’s and thoughts of other people… my journey and the way I go about it is what makes my Ms story personal to me…I choose to laugh in the face of my own diversity…  ” I refuse to use MS as a crutch or an excuse for the bad days that may block my day-to-day paths, I put on a brave face each & everyday… wearing strength & inner perseverance like a super hero cape even when the days have me feeling like I have no energy to power on.”


Awhile back I wrote the below poem titled “This Is Me”… A summation of the everything that I am… & I feel its a perfect summation of  today’s scrawling’s and my inner thoughts.

“This Is Me”
I’m not a stranger to the verbal words spoken behind my turned back
I see the finger-pointing
& I feel the stabbing pains that dig me deep within my heart
Pushing me to my breaking pointing
Expecting me to run
Run as far as it takes where no one can see me
All because they say its fun
To pull away at my inner workings
To see how I tick and toc

They want to see me hurt
They want to feel my need
All so that they can say that they were the ones who saved me!

I walk alone in my own stained glass tears
Pushing forward with all that wills me
Through the barricades of people who hold me back
& onto the footpath that I have built for me
And when the darted words make my life unbearable
I choose to walk tall vowing that my tears will never fall.

Silent moments and a flood of tears
Away from watching eyes and cheers of laughter
Silence becomes my comforter
As my legs raise me to where I am ok again.

I am not scared to have to have an opinion
& I am not scared to make it known
& whilst I certainly do not walk without fear
I am comforted by my guiding morals and values
I make no apologies,
I welcome my strength and know that this is who is me.
And when their words
Try to bend and break my resolve
I put on my brave face
& walk proudly on.

I am me
I am unique
I am the best me that I can be.
No hesitations
No apologies
& certainly no damn sorry’s
For I am being who it is that I was meant to be.

Written By
Tanya Kelly
2019


So… “Is My Condition Part Of What Makes Me… Me ?” …. Hell yah it is… & his name is “ My Story, He Is Male, He Identifies As A Comedian” and together “ My Story & I ” live with a positive attitude that has a humanising element of who & what “My Story”  & PPMS” is to me…

PPMS, “My Story” & I  are the elements of me that make me; me!


So there it is my thoughts and perspectives on an interesting question came into my inbox.. (“Is My Condition Part Of What Makes Me… Me ?”)… the very thoughts that got me thinking about my Primary Progressive Multiple Sclerosis, and about how PPMS, “My Story” & I  are the elements of me that make me; me!

Reference/s – https://themighty.com & https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf


Thank you for sticking with me & my long winded writings and thoughts. I hope that through my words you gained a greater understanding of what Multiple Sclerosis is and how the many of thousands of people who have it get through their every day’s.

Multiple Sclerosis may have altered some of my body’s workings & it may have altered the way that I do thing in my day to day life… but I am strong and I live each day to the fullest with a hope that the generations that will follow in my footsteps will live a life without Multiple Sclerosis or any other autoimmune disease in their timeline.


<== This Blog Post’s Other Pages ==>
Introduction  –  #1  –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com


Day #133 “Is My Condition Part Of What Makes Me… Me ?” – Part #3

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com &
https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf


img_3811-1So to answer the question put forward at the beginning of this daily write:- “Is My Condition Part Of What Makes Me… Me ?”

Well the answer is yes… yes of course my condition & diagnosis of Primary Progressive Multiple Sclerosis is part of who I am… but not in terms of “Am I Who Is It Is That I Am Because  I Have Been Diagnosed With Primary Progressive Multiple Sclerosis?” Well the answer to this is no, no my PPMS hasn’t made me who it is that I am & I certainly do not write about the things that I write about in my daily scrawling’s because of my Ms.

Some Background To My Daily Writings

I have been writing since I was very young & I have always written  at some level for these many years but on January 9th, 2018 I took up my daily writings as part of an agreement that I made with myself.  (I wanted to start up journaling again but was seriously concerned about the safety and security of my writings because some years ago my journal was stolen and handed around my teenage community of friends – from that moment I vowed to never journal again).

So in January last year I started writing on a daily bases and submitted my daily thoughts at http://www.750words.com&#8230; this writing forum was locked by a username and password… so I began writing and submitting my daily scrawling’s and felt secure in doing so.

So time rolled in and I was already dabbling in my thoughts of blogging… but there was no way that I was going to post what I had been writing about in my 750words.com’s daily postings… some of it was ok to use… but there was a degree of “personal anonymity that I want to keep.. for both me and my writings sake.”

I was so bogged down by my initial setup of my blog because I wanted to use my web design skills to create a website/blog that was all mine… I was do weighed down by the designing process of my blog that I becoming very overwhelmed by the whole idea of blogging, so I bit the bullet and put my design wants aside and began a free blogging site with http://www.wordpress.com – a site that is today known as 365 Day Somethings (http://365daysomethings.wordpress.com).

What I write about at 365 Day Somethings isn’t all about my diagnosis of Primary Progressive Multiple Sclerosis… there are posts about my PPMS but it rates the occasional mention and only from time to time.

Before I was diagnosed with PPMS I was a writer with much to say… but writing poetry & daily journaling was where I was in my wants for my writing journey.

As a child I did have ideas and or thoughts of becoming a journalist or a columnist but these parts of my secret thoughts and wants for my life were avenues and aspirations that I never pursued.

So before blogging and daily writings at 750words I was a web designer and the occasional writer of poetry… & when I say occasional writer of poetry what I mean to say here is that I probably have a few hundred pieces of written pieces that I have written over the past years.

After my actual diagnosis of PPMS I do think that I became more serious about my writing abilities and my wants for my many stories and hidden thoughts to be written…

There was a part of me that thought that my stories would be of some comfort to my Family and Friends in the event that my PPMS was to take a turn… I wanted to write and share the things that I kept within and didn’t share freely with others… I suppose that you could say that I saw a need to get writing and to finally download my many thoughts.

So in terms of the question at hand “Is My Condition Part Of What Makes Me… Me ?” Mmm… like I said … yes no and maybe in a small way it it… but I have always had a writing voice and I have always had an opinion about many things… but I do feel that I dont use my writing voice, my many daily writing avenues and my diagnosis of PPMS to have my say… in fact I more of a “prolific personal writer – an author of many writings “ but in saying that I am not a writer that chooses to write about things that are going on in and around the world… I have written about things in a more open stance before but I feel that my writings could be seen as a “personal collection of memoir elements that put together will tell the many stories of who it is that I am.”

Writing about my Primary Progressive Multiple Sclerosis is a small part of who I am, there us apart of me that want to write as a Warrior and a voice of Primary Progressive Multiple Sclerosis… I do have moments where I want to use my writing abilities to bring a voice and an awareness to Multiple Sclerosis and the life altering symptoms that causes Ms’ers the many limitations that’s its diagnosed disease brings… yes there is a part of me that has a want to advocate for the awareness, the education and the voice for Multiple Sclerosis… but I selfishly want to tell the stories of how my own personal journey and diagnosis of Primary Progressive Multiple Sclerosis affects and impacts me, my loved ones, my immediate family and my many friends near and far.

My personal stories will with hope become my personal memoir… a story of who I am that will in some sort of left handedness will serve to educate others about the fight and cause of  the disease know as Multiple Sclerosis.


<== Please Go To Blog Post #4 To Continue Reading This Blog Post ==>
Introduction  –  #1  –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com


Day #132 “Is My Condition Part Of What Makes Me… Me ?” – Part #2

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com &
https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf


img_3811-1I personally see my own Primary Progressive Multiple Sclerosis battle as it is a “Symbiont”) – An organism in a symbiotic relationship. In cases in which a distinction is made between two interacting organisms, the symbiont is the smaller of the two and is always a beneficiary in the relationship, while the larger organism is the host and may or may not derive a benefit from the relationship.

And then there are times when I see my Primary Progressive Multiple Sclerosis as a parasite (Parasitism is a kind of symbiosis; a close and persistent long-term biological interaction between the parasite and its host. Parasitism is a relationship between species, where one organism, the parasite, lives on or in another organism, the host, causing it some harm, and is adapted structurally to this way of life).

Why can’t Ms be known as a parasite?… after all what Ms does to the body is that it eats away the insulating covers of nerve cells, the brain and the spinal cord causing quite a bit of damage and leaving scars along the way… disrupting the ability of parts of the nervous system; causing it to miscommunicate with the body, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems.

So What Is Multiple Sclerosis In A Nutshell?

Ms is a demyelinating disease which means that it is a disease of the nervous system in which the myelin sheath of neurons is damaged. This damage impairs the conduction of signals in the affected nerves. In turn, the reduction in conduction ability causes a deficiency in sensation, movement, cognition, or other functions depending on which nerves are involved.

However, a person chooses to take on the plentiful gifts of Ms &it’s many symptoms is purely up to the person who has been given the diagnosis of Multiple Sclerosis.

In my journey I choose to have a sense of humour (that I hold “My Story) responsible for), I keep busy with my web design/computer technician work, my many writing adventures & of course my blogging journey. I’m a busy Mum of 3 and a Wife to a very supportive Husband who all work hard to keep me grounded and on top of my Primary Progressive Multiple Sclerosis ailments.

I may sound chipper and it may seem that I have a can do, will do & have to do attitude about this whole life-altering story that has me in a not so bad of a way; let my words be heard but please don’t think that my journey has been and will be in the future an easy one, I have many many hard says and some land me in bed for days at s time… I work hard to keep myself on top of things & I work even harder to complete my own self appointed daily schedule… some days are more of an ass kicking than I let on… some days are full of self-talks and muttering moments that spur me to get a move on…

My Diagnosis of Ms has given me many hours of self-doubt… but I will never let myself get to the self-pity stage… I get angry for my family who has to endure the struggles that are not theirs (they also have to take on some of chore lists when “My Story” decides that he isn’t going to be a team player and work to get the house and its many chores done)… I am afraid of what tomorrow will bring… to be frank I am scared shitless of the unknown… I am in constant question time with my mind and souls governing body, it always seems to be in censorship that I am way to busy and mindfully active for someone who has PPMS but being busy in my many daily habits, Family and work life is where I get to be me… the me who has a diagnosis of Ms but is able to push through and just get shit done.

The best advice I could give to anyone struggling is this… get a notebook and write, write, write… Write about anything, writing is the best therapy that you could give to yourself.

Find a hobby, join a book club, take on a new adventure… but please whatever you do… “DON’T SIT STILL” sitting still and giving up will allow Ms and any other autoimmune disease to take over the cognitive functions of who it is that you are…

Like the saying goes “Strength In Numbers – When Referring To Bullying “ I believe that “A Can Do Attitude & Willful Strength Will See Those Brain Fog Days & Kick Ass Symptoms As Moments Of Resting Time For One’s Inner Courage.”

Building strength and determination that will help you to reach deep within… giving you the power to see you through your toughest days is what makes up the best defensive game for you and your Ms journey… will yourself every day to never give up… Ms doesn’t have to be the end of all your life’s ambitions… every person’s Ms is different so it is up to you to draw what will be the map of your life’s path.

“Ms Doesn’t Get To Wear The Warrior Costume & You Don’t Need One; Getting Up & Everyday … Pushing Hard To Be The Very Person You Can Be… Will Become The Grit & Grind That You Hold Onto Strength & Sheer Determination Will See Your Foggy Days Clear… Your Own Warrior Journey Will Be Your Best Run Race The Warrior In You Will Be Victorious When You Take Ms Head on Into Battle.”


<== Please Go To Blog Post #3 To Continue Reading This Blog Post ==>
Introduction  –  #1  –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com


Day #131 “Is My Condition Part Of What Makes Me… Me ?” – Part #1

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com & https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf


img_3811-1An interesting question came into my inbox this week.. this question got me thinking about my Primary Progressive Multiple Sclerosis, about me & about how the two parts make me; me…

The question that was asked is this “Is My Condition Part Of What Makes Me… Me ?”

So this question by “The Mighty Community Website – which is a supportive community for people facing health challenges and the people who care for them.” got wondering and then all of a sudden I went all sci-fi on my identification of what Multiple Sclerosis may actually be…

My thoughts are kind of a funny now that I am taking the time to sit down and read what it is that I have written. I actually sat down to put some serious thought time into the question at hand…

Blame it on my pain meds or on “My Story – (Ms for short) for the way it chooses to humanise himself with his spits and spats and tit-tat moments of humor… you see… from time to time “My Story” plays out his days as a comedian… he does thinks he is funny… I like to to laugh at him deliberately because I find that he is nicer to me in the days after he has had a good night laughing with his audience… when he has a feeling that my laughter is being disingenuous (not laughing because he is funny… laughing because I know it benefits me and weeks level of suffering)… he serves me a great big bloody hug… taking the air out of my winded sails and forces me to tap out… collapsing into an unscheduled nanna nap.

At first … when I began writing this piece… I wondered in some kind of a half arsed thought; if I was actually living in some sort of codependent relationship with “My Story “ at the helm.. I started to wonder if I was actually the one that was codependent on “My Story” … relying on him soon became over run by the thoughts in my head – screaming out “You codependent on “My Story” oh what a laugh… (seriously I couldn’t be reliant on “My Story” what does he bring to the table besides the attention that he brings me by adorning my body with its ping-ponging funky walk)…

I quickly thought nah to the thought of me living in a codependent relationship with “My Story”… I ‘m not an attention seeker snd my funky walk … well after 6 nearly 7 years of it actually being in existence… it isnt that funny anymore… being flung into my wardrobe as I stumble off balance whilst trying to dress is just not funny anymore… let me not even entertain you with my many stories about my 4am meetings with my hallways door handles that love to stamp my body with bruises.

Who knows; maybe it’s “My Story) that is actually the codependent person in our relationship… after all the definition of codependent is (behavioral condition in a relationship where one person enables another person’s addiction, poor mental health, immaturity, irresponsibility, or under-achievement. Among the core characteristics of codependency is an excessive reliance on other people for approval and a sense of identity)… he certainly has a need to be attention seeker, he thinks he is funny, seeks approval by forcing me to laugh at him or he causes me to hurt… and that funky walk he has me doing !! Immaturity Right There !! Yep “My Story” most definitely has a reliance on me for a sense of identity… as warped as it maybe!

Now with all seriousness & with “My Story” & his identity aside…

Maybe just maybe; Ms requires us its life-altering subjects to have life-altering symptoms for it to gain what it needs from us ie myelin and energy…. maybe it has a substance issue and the symptoms that people with Ms suffer from are the very things that Ms is physically or psychologically addicted to…

My theory is that maybe when Ms doesn’t get its fill… it falls into a relapse and drains its human host and land him/her into hours and days of suffering the symptoms of its temper tantrum… stepping up in intensity… proving that it is in charge by allowing the human hosts immune system to eat away at the bodies protective covering of its nerves… tap dancing from head to foot … stopping from time to time to hug its host… making sure that they know that it’s not yet time for Ms to return to its plateau – where it sits in quiet, entering a state of quiet where it has little activity or progress in the progression of its severity and or symptoms.

Then I had a questioning moment where I asked myself with some degree of curiosity… Is My Body A Vessel that carries Ms along in its journey? Or is my Ms a succulent (adaptive and able to absorb and manifest itself and its altering conditions to suit it’s here and now… able to grow into what it wants to be … knowing that it has little to no medical intervention or medication regimes to stand in its way.

Then another thought came by… Is Ms an organism, unfounded, unidentified by today’s scientific world… is it possible that Ms may actually be a parasite or a symbiont feeding on my fatty myelin, whilst wrapping itself around my nerve fibres either to keep warm, or maybe Ms is wrapping itself around my nerve fibres in order to fill its own energy reserves for the purpose of altering me, my abilities, my onslaught of symptoms and of course the level of ever-changing disabilities.


<== Please Go To Blog Post #2 To Continue Reading This Blog Post ==>
Introduction  –  #1 –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com


 

Day #130 “Is My Condition Part Of What Makes Me… Me ?” – Introduction

“Is My Condition Part Of What Makes Me… Me ?”
Reference/s –
https://themighty.com &
https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf


This is a preliminary post about what I will be blogging about for the next few days. This post that I wrote is quite long so I thought that I would sit down and post it to my blog over a few days.

So what are the next few days of blogging to be about? Well in my e-mail’s inbox a few days ago a question caught my attention… so I thought that I would sit down to write out an answer to the question being asked… (apologies in advance)… It’s seems that my thinking thoughts ran away with my finger tips and together they got a little busy…  unfortunately for you I seem to be a marathon writer – I like to write lengthy posts… but even I think that this one may be a little to long… (but I just couldn’t cut it down to a reasonable & a read worthy size).

So I have placed my thoughts into a few blog posts so I don’t bore you to death.

(I even created the graphic to the left of this blog post to give you a clue of what I will be writing about).


So here is the question that I found in my e-mail’s inbox.
“Is My Condition Part Of What Makes Me… Me ?”

Referenced Websites
https://themighty.com &
https://themighty.com/content/5c8a4aa63e5bbc00e49c3dcf


<== Please Go To Blog Post #1 To Continue Reading This Blog Post ==>
Introduction  –  #1  –  #2  –  #3  –  #4

Signed
Author. Tanya Kelly
365daysomethings.wordpress.com